At the Arc of El Paso we have seen many COVID-19 concerns related to the safety of family members. As Texas begins to reopen with the uncertainty that brings, we know these concerns will not immediately go away. We know there will be debate between health and re-opening the economy, and as Texas begins to take the first small steps, I ask you to reflect on your life and the life of your family the past few weeks during the stay-at-home orders and social distancing. Did boredom creep into your family? Did you see frustration? Was it lonely at your house without relatives and friends? For parents with school-age children, was it hard to help your children learn?
The isolation and feelings you experienced for a few weeks is sadly part of everyday life for many people with intellectual and developmental disabilities. They felt this isolation before COVID-19, and many will experience this isolation after COVID-19 is a memory. Isolation often grows when a student is no longer eligible to receive special education services. Boredom and frustration are magnified. While their parents would want to provide for their child just like any parents, the cost is astronomical. The specialized services and supports their child needs can inch up to $100,000 per year. That’s a lot to pay out-of-pocket, even for somebody making top wages in El Paso, and this is why virtually all families rely on Medicaid Waiver Programs to cover the costs, because the costs go far beyond what private insurance or Medicaid would normally pay.
Medicaid Waiver Programs and Medicaid are not the same thing. While both are programs administered by Texas for Texans, Medicaid is a benefit that once you are determined eligible to receive, is given fairly quickly. Medicaid Waiver Programs on the other hand can take twelve to fifteen years to receive. It would be like going to your neighborhood elementary school to enroll your child in kindergarten and to be told your child will receive kindergarten instruction in twelve to fifteen years. You would be frustrated if you heard that from any school district (which of course you wouldn’t). You might try to win a seat on the school board, or you might go to the news media, contact the governor, your representative, or senator. You would fight this injustice because your child deserves so much more.
Children with intellectual and developmental disabilities, whether they be school-age or adults, also deserve so much more. I wish I could tell you that I thought Texas cared for people with intellectual and developmental disabilities, but when waiting lists have numbers well over 50,000 and it takes more than twelve years to reach the top, the numbers tell me otherwise. If you went to a hair salon or barber shop and found out you were number 50,000 on the waiting list, would you stay or walk out? I know I would walk out because I have the luxury to walk out. Maybe you have this same luxury. These Texans with intellectual and developmental disabilities don’t have that luxury to walk away from their waiting list, nor do their families, and the only choice for these people is to stay-at-home in isolation from their community as they wait twelve to fifteen years for their number to be called, as boredom and frustration sets in.
I know Texas can do much better to meet the needs of people with intellectual and developmental disabilities, and as Texas begins to re-open and your life and the life of your family returns to normal, please remember there are Texans living in your neighborhood who because of the circumstances of their birth, and the lack of support from the state they call home, will have no choice but to stay-at-home in isolation for the next twelve to fifteen years.
The Arc of El Paso promotes and protects the human rights of people with intellectual and developmental disabilities in the El Paso borderland region and actively supports their full inclusion and participation in the El Paso community throughout their lifetimes. We fight to resolve injustices like this twelve to fifteen year waiting list. If you would like to learn more about The Arc of El Paso we invite you to visit our website, www.thearcofelpaso.org and sign up for our newsletter at bit.ly/arcepmail.
Tom Laign, President